Phoenix Rising reports on the London IiME conference: It’s a new era of research


Mark Berry from Phoenix Rising has penned his first report from the 11th Invest in ME international conference on ME/CFS in London. These reports are always great quality and very good reading. The official Invest in ME (IiME) reports should be out any day. This initial report was a summary of Mark’s notes as he explained:

“For my part, how can I sum up my personal reflections from another incredible conference? Firstly, the above looong article is just a summary of my notes (and there will be more detail to follow soon in further articles), so I urge anyone interested enough to have read this far to buy the conference DVD and learn more.”

This first report comprehensively covers the conference day. It includes information on Dr. Ian Gibson’s introduction and an important keynote speech by Dr Vicky Whittemore – Program Director in the National Institute of Neurological Disorders and Stroke at the National Institutes of Health, USA. Mark quoted Dr Whittemore:

“She hailed the “new dawn” and “new vision” for ME/CFS research in the U.S. government agencies, acknowledging historical problems like the “shocking and disappointing” funding levels.”

“She said that her “hope and vision” was to return to IiME in the next two years and present a graph showing levels of government funding for ME/CFS research “off the charts.”

Funding needs to happen faster for researchers who need significant funds via RFAs (Request for Applications) and they need funds now to continue critical research. This is a positive public statement, we hope Dr. Whittemore will be able to deliver – so far Dr Whittemore’s communication has been positive.

Some key information from Dr Hornig’s talk that was highlighted

Reproduced here in full with permission from Phoenix Rising:

“After a lunchtime during which an extraordinary collection of the world’s top ME/CFS researchers and physicians networked extensively with every conceivable kind of stakeholder in the world of ME/CFS, Professor Mady Hornig began the afternoon’s presentations.

She started out with a summary of the ME/CFS research programme at Columbia University, together with a rationale for their mission.

The group there has been working to identify pathogens and triggers for ME/CFS for quite some time. Her talk illustrated the complexity of the task.

With a long list of suspected viral triggers (many of them already implicated in a variety of brain disorders), and a variety of microbial and immune factors involved in a complex disorder, some major problems are: how to make a connection specifically to ME,  how to explain multiple viruses triggering one disease, and how to tie everything together in a way that makes sense in terms of diagnosis and treatment.

Much of her wide-ranging and complex presentation aimed to explain why her group’s model of ME is an immune-mediated brain disorder, with a significant connection to the gut. When the microbiota (gut microbes) are disordered, disorders of brain function are among the many consequences.

Organophosphates, viruses and intoxicants can all disrupt the microbiota, and even cause epigenetic changes in the gut microbes themselves, with long-lasting effects. She spoke of how a disrupted microbiome could induce changes in the metabolome and how a skewed microbiome might make development of an autoimmune condition more likely.

Expanding on the gut-brain axis, Hornig presented a more complex slide illustrating the gut-microbiota-metabolomic-brain axis. She and her team are trying to piece together how all these complex interactions may ultimately affect the brain.

The numerous strands of their ‘staged strategy for pathogen discovery in immune-mediated disorders’ includes studies in association with NIH (NINDS and NIAID), the Chronic Fatigue Initiative, Dr. Montoya at Stanford and Dr. Peterson.

Hornig highlighted the group’s 2015 study “Cytokine network analysis of cerebrospinal fluid in ME/CFS” in which they found IL-6 at nearly undetectable levels, and said that further studies were investigating this and trying to tie the cause back to the microbiota.

In this effort, she was particularly interested in the potential for disruption to the tryptophan degradation pathway in response to infections and other stressors.

But in summing up, she again indicated the complexity of the disease models that are emerging. From the classical model of “one microbe, one disease,” it is now becoming clear that a much more complex set of questions must be answered in order to understand complex diseases: who (genetic susceptibility),  what (shared epitopes), when (triggers), where (in the placenta, GI tract, or elsewhere), why, how (e.g., breakdown of blood-brain barrier).

All of these factors, in multiple combinations, come together to form a disease profile — a complex picture indeed!”

A feast of science

The article goes on to cover all the talks by the following Professors and Doctors, the titles of the talks don’t necessarily reflect all of the content in them. There will be more in depth articles on some of these talks to follow and you will be able to find these on Phoenix Rising as they are published:

Professor Olli Polo – ‘Clinical Diagnosis of Myalgic Encephalomyelitis’

Professor Carmen Scheibenbogen – ‘Autoantibodies to adrenergic and acetylcholine receptors in CFS/ME’

Dr. Jo Cambridge – ‘Immunoregulation in patients with ME’

Professor Tom Wileman – ‘Gut Virome in ME’

Professor Don Staines – ‘Update from NCNED: Receptor identification and intracellular signalling’

Professor Simon Carding – ‘The European ME Research Group (EMERG)’

Professor Mady Hornig – ‘Pathogen Discovery in ME’

Professor Maureen Hanson – ‘The Search for Biomarkers for Myalgic Encephalomyelitis’

Professor Elisa Oltra – ‘Molecular Biomarkers of Myalgic Encephalomyelitis’

Professor James Baraniuk – ‘Exercise Testing and Orthostatic Tachycardia’

Professor Ron Davis – ‘Big Data Approach: Severely Ill ME Patient Cohort’

Read the excellent overview on the conference here: ‘A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016’

Please note that not all information can be shared from conferences, information is often under embargo pending publication of research papers.

Many thanks to Mark Berry and Phoenix Rising for reporting on the Invest in ME conference.